Who has gone off their MS meds? What happened?

[Bookfairy]

I am 65 and thinking about going off my Extavia because of the cost. I am looking for people who have stopped taking their MS meds. I have another thread asking about Extavia, and some of you on other meds replied. Thank you! I would like to hear from others that have stopped other MS meds. I would love to hear from Cat Dancer because I think she went off her meds and didn't fair well. I am talking about the ABC one and those new ones that are now replacing them.

[Virginia]

Bookfairy, I am on Rebif and I am a good bit older than you. I hope I do not have to give it up. No one really knows how older people do when going off a DMD. I guess as with, all things MS, it might vary. I just hate to risk it.

I do hope Cat will come along and tell you her experience when she was advised to go off her's by her PCP.

Good luck with your decision. It is a hard one.

[snack]

I stopped Avonex in 2009 and nothing happened, I am doing better than I was on it. Only med I am taking is cannabis oil.

[Jeanie Z]

:) I stopped Betaseron after 5 years and Avonex after two years. In 2000 I went on LDN and have been on it every since. I have not had any new symptoms or progression since going on LDN. I take 4.5 mg nightly capsule of LDN. Info at Only registered and activated users can see links., Click Here To Register... and I get a 90 day supply to save on postage and it is $107.00. I send my RX to The Compounder.com and he ships overnight.

I have had MS since I was 18 and now I am 76. I live alone and still drive, shop, etc. I do sleep a lot too.

Welcome Snack! Jeanie :)

[Sunshine]

I stopped Avonex in 2009 and nothing happened, I am doing better than I was on it. Only med I am taking is cannabis oil.

I too stopped Avonex in 2004 after I nearly died on faulty batches. I did very well until a couple years ago. But it’s unckear whether this rapid detdisease deterioration is MS or Stiff Person Syndrome or both.

[Catdancer]

I went off Betaseron --on the advice of a primary care physician. I had been on it for years with no progression, doing well: walking some with forearm crutches, in a wheelchair for distances,

Two years later I had a major flare. Developed a esophageal ulcer causing serious nutritional issues, lost the ability to walk at all, can not even transfer from bed to wheelchair. Developed massive pressure sides which required surgery to repair. Nearly died battling a blood infection that affected my liver, kidneys. Had a bit of my tailbone removed to stop the infection from entering my bones. Had Osteomyelitis anyway. Three hospital stays and two nursing home stays later I came home.

All this in the past five years. I now have a colostomy and catheter, need help getting in/out of bed, need help to dress, bathe. I spend my day in my wheelchair as I am unable to transfer to another chair. My husband checks my butt twice a day for any soreness in an attempt to ward off any new pressure sores. He dresses me, helps me out of bed using a stand lift. Gets me in/out of the shower using the lift.

He is 76 with health issues of his own. I just turned 71. Should he die I would need to immediately move into a nursing home. He has had to move from husband to caregiver.

I am now on tecfidera. The MS seems to have stabilized, but without any improvement of abilities.

Going off the Betaseron was a really terrible decision.

[Parsi]

I turn 67 tomorrow. I had monthly unexplained problems prior to dx. I was put on Imuran because of the cost of interferons. The doctor kept upping it without it becoming effective. When a friend guided us on how to become eligible for affordable Betaseron, that's what I changed to. I was on it for a couple of years before it became unavailable where I lived. I was offered Avonex, but delayed a few months until I could talk to my doctor who was out of country. He okayed it and I was on A for a few years. For a period I felt good/normal. But overtime it got to the point that I felt miserable all the time. So I quit.

I do credit the interferons for preventing the MS from presenting worse. Overall I say that my MS has been mild. There have been no drastic decline. What I've experienced the last few years is possibly due to age and inactivity. Whenever I actually look after myself I do feel better.

[agate]

Bookfairy, except for the new Ocrevus, all of the disease-modifying drugs for MS were meant for RRMS. There was some evidence that Betaseron might work in some people with SPMS but aside from that, the drugs just weren't tested in people with SPMS. Many neurologists, including mine, believed in trying them anyway for SPMS and went ahead and prescribed them. Even Ocrevus isn't intended for SPMS but has been approved for primary progressive MS.

For a long time I was willing to go along with this idea that taking whatever was available on the offchance that it just might help, even though I had doubts about whether someone as old as I was and with SPMS for as long as I'd had it would benefit.

So I had 3 years on Avonex, then a break of a couple of years, then nearly 3 years on Copaxone. When I passed out a few hours after an Avonex shot, I decided to stop it. With Copaxone I was having severe groin pain as well as lipoatrophy that would eventually have made it harder and harder to find a damage-free injection site.

There was no evidence that either of these drugs had been helping me. However, I might have done far worse without them. Who knows?

That sounds like a good reason to stay on one of them, and sometimes I'm tempted to ask if I could return to Copaxone. Then I remember how old I am (77) and that I have diabetes and arthritis and decide that maybe I'd better not rock any boats. The MS is going to do what it's going to do, I figure.

[Lazarus]

Seems like we all have forgotten the value of the developed drugs. Hoping to stop progression is not something you notice. The dmd drugs don’t act like, say, an aspirin. You do not see or feel the problem go away. While you are not noticing the MS is destroying your myelin until there is so little protection left that your nerves short circuit and then boom!

When we take these drugs we are betting on the science behind them. Betting and hoping. That’s what we do..

[Virginia]

Linda, that was so well said. The drugs never (as far as I know) promised to make us feel better like other drugs do. You just hope that they are slowing the progression of something that can put you on your back for good. I don't know if I will be able to afford mine when my current funding runs out, but I will try because for me that is what I feel I need to do. Not everyone feels that way. It is kind of like in our politics, we are all entitled to our opinions.

[Bookfairy]

Cat Dancer
Thank you for your story. I am really sorry you are going through this. I am afraid what will happen. I was diagnosed around 12 years ago and only have fatigue, numbness, minor balance issues. I am not sure how long I will feel like I can pay $9000 a year when my husband a I are both retired. I really appreciate you taking the time to fill me in.

Thank you everyone. I have a year to decide and will keep researching. At the moment I want to stay on them as long as we can afford them.

[Sunshine]

Other factors to consider
For example. My neuro rec Ocrevus or Rituxan. My immunologist who dx me with CVID thinks it would be a disaster due to my Immune Deficiency Syndrome (CVID).

Everyone has unique considerations.

[Ikoiko]

FYI, Bookfairy: I get Rituxan infusions in a hospital clinic. I Have zero copay due to the fact that the drug is given in a hospital. I have Medicare, plus BCBS.

[Lazarus]

FYI, Bookfairy: I get Rituxan infusions in a hospital clinic. I Have zero copay due to the fact that the drug is given in a hospital. I have Medicare, plus BCBS.

I am glad you said this IKOIKO. All the chemo drugs I have taken are given at an infusion center and, you are right, there is no charge to me and not even a copay. I have never encountered any MSer who paid out of pocket for infused drugs. Friends of mine also get steroid infusions at the same place with no copay either.
I keep forgetting to say this but am glad to have been reminded.

[soul]

I discontinued Rebif @ high dose, after 18 years of injecting in 2012 actually I believe it was the 13th of August
I had quite a few problems after about 18 mouths out, now I am dealing with a Secondary Auto Immune disorder. I seem to be allergic to most things I had to go all natural with fabrics and clothing and many other changes as well.
soul